Dodge Family

In March of 2020, Rowan started having some facial tics on the left side of her face. At first it was not noticeable and we knew only because she told us. It was not unlike the small twitches anyone gets sometimes when tired or over-caffeinated. These progressed into visible facial tics after about a month. Her face would visibly contort for short periods. However, it was not painful or very dramatic. She saw her Primary Care Physician,who diagnosed her with Chronic Tic Disorder and said it was normal for some children her age to develop tics and it would eventually go away as she aged. These tics can manifest themselves in any manner of ways, not just in the face. We were referred to a neurologist in May for a specialist’s opinion. Due to the pandemic, we could only do a video conference online. This doctor confirmed what the PCP had told us. Things did not progress too much until online schooling started in September.

Rowan’s facial tics started becoming more frequent. Then, in October, right after she turned 8, she started complaining about numbness. Like her facial tics, this was only in her left hand. For varying times up to 20 seconds, her hand would be numb and she could not use it, like waking up to find you slept on your arm. She was still not experiencing any pain though. We were alarmed and called Seattle Children’s Hospital and set up another video appointment with a neurologist. A nurse said the numbness could be an issue related to the Tic Disorder. The doctor still said this was normal. As time went on, the numbness got more frequent and longer in duration.

By the end of November and into December, she got her first bouts of pain in her left hand. She had been doing taekwondo and could often not hold the nunchucks during class. During one Zoom session, she dropped them and broke down crying in pain. Fortunately, the instances of pain were very few and far between. It was usually just numbness. This coincided with things that began happening during her online schooling. She began getting nauseous during class and had to miss a few days or partial days. Given her age and difficulty understanding and describing medical issues, it was hard to tell exactly what she was going through. Any doubts about her illness, like thinking she just didn’t want to do class, were erased when she began throwing up. She also began getting headaches every few days. By this time, the numbness in her left hand came so often that she just stopped using her left arm altogether to do anything, unless reminded to.

Things got to the point where we simply couldn’t believe this was “normal” anymore. We called her PCP and he saw her that day. He said she could be suffering from migraines. He also said seeing a neurologist online, as we had done, is essentially pointless, as they cannot interact with a patient appropriately for a diagnosis. It was like diagnosing something from WebMD. He set us up with an in-person neurology appointment, as well as an MRI at Bellevue Children’s hospital. This MRI was to “rule out”a brain mass. All the way up to this point, she was happy, active, and all-around normal, other than the intermittent episodes described. She went with mommy to the MRI appointment at 7:30 am after saying a cheery goodbye to me getting back from work, with her 9-year-old brother Liam still asleep.

Immediately after the MRI, Sarah was told there was indeed a very large tumor on the right side of Rowan’s brain and she needed to go to Seattle Children’s ER immediately. The radiologist was shaking because she knew what she was looking at. I was woken up to this news and my mom was there already from Bellingham to take Liam and the dog. At Seattle Children’s, Rowan was in the ER for a few hours, then admitted to the ICU. Due to Covid, parents could not be in the same room as their child at the same time, no matter how serious the condition.

Considering the news, Rowan was still upbeat. This was probably half due to her age and not being able to comprehend the magnitude of the situation and what needed to be done to her. The other half of her resiliency is just her can-do attitude and ability to weather things well for her age. We could tell she was scared and wanted to go home though. Children’s and its staff made it as comfortable as humanly possible for Rowan and eased her worries a little. Ice cream helped a great deal. We got a hotel and began trading off in her room so she would have one of us in there 24-7. Her brother has been understandably scared and having sleepless nights but is doing better with amazing family by his side.

The neurology team at Seattle Children’s is one of the best in the country and it was clear from the start that if something could be done, it would be. Operating surgeon, Dr Ojemann, MD, is the Surgeon-in-Chief at Seattle Children’s, as well as Senior VP and is one of the preeminent surgeons in the country. The MRI was mind-blowing. The tumor was massive, and for it to be in an 8-year-old’s head, for what doctors said could have been up to a year, was both amazing and tragic. Rowan was admitted to the ICU on a Monday and was in surgery early on Wednesday. This was such a massive undertaking that the entire neurology team, including an oncologist (cancer specialist), dedicated their whole day to her. After a roughly 7 hour surgery, the doctors declared a surgical success, removing everything harmful that they could see from Rowan’s brain.

Rowan was moved out of the ICU on Thursday to a normal observation room. Although she looks like she was in a massive fight (in a way, she was), her progress has been very positive. As of the writing of this, while only being able to muster a few words at a time, she is strong willed and has been denying the strongest pain medications and insists on trying to do everything herself. Just going to the bathroom has been a struggle so far and requires a nurse and a parent. Physical, speech and occupational therapy are on the imminent horizon. She is already showing promise with her left hand that we know now the tumor was affecting. We are awaiting lab results regarding the tumor tissue itself (benign or malignant) and a discussion with the oncologist. Unfortunately, the neurology team was almost positive the tumor was cancerous, based on its aggressiveness. While the post-op MRI showed no more tumor, a cancerous result could mean further treatment up to and including chemotherapy if the tumor starts to return or if they find more of it, unseen in the recent MRI. She will likely have to be aware of this possibility her whole life. She will have a massive scar on the entire right side of her head up to her scalp. Fortunately, she has hair to cover it. Also, being an unfortunate recipient of neurosurgery myself as a teenager (due to physical trauma), I can empathize with living with that physical reminder and can help support her psychological well-being with it. I can tell you now that she will definitely be self-conscious of that scar, whether she outwardly shows it or not, and could use moral support in that department as well.

Rowan may never be out of the woods, but the sheer outpouring of unsolicited support, from several states no less, shows that she will never be alone in this battle. She has an unwavering network of family support that would do anything for her, as well as an army of friends, an entire taekwondo studio and people who have never even met her that are dropping everything to offer any support they can. Both of our employers have been nothing if not amazing in their understanding and willingness to help. Sarah and I had been reluctant to accept any help at first, out of habit, but we know it’s all about Rowan. We have both been humbled and brought to tears by this event and the immediate and massive show of support. Everyone wants to support Rowan (and us) in some manner and we will graciously accept it. The only thing we will actively ask for is love and positivity for our baby girl. Thank you everyone for keeping Rowan in your thoughts

Above is a letter written by Rowan’s father. I thought it was important for him to share their story. Please consider helping this amazing family and wonderful, vibrant little girl.  Their life’s have been turned upside down in a matter of days. Please anything will help to make this situation easier so the Dodges only focus is on Rowan’s health, Liam and themselves. 

Thanks Again